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Janedoll

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  1. Yes, I see Dr. Najjar for PANDAS. He actively treats me with IVIG every three weeks for the past three years. He also does high dose steriods to get rid of my tics if need be. The IVIG isn't as effective for my tics. Quite frankly, he saved my life. I'm doing great, I live completely normally. I have had PANDAS for 17 years and he is without a doubt the best doctor I have ever seen. I'd say he gets me back to about 80%-85%. I'm usually 90% with supplements. I work full time and just finished a master's degree. My experience has been that he treats very aggressively. I was in remission for about 10 years after my orignal diagnosis but it turned into PANS once I was in college after a myco infection. He is my adult neurologist. Please PM me with any additional questions. This is all that I am comfortable sharing publically.
  2. Thank you the responses. I found an interesting document online. http://www.cga.ct.gov/2015/fc/2015SB-00015-R000012-FC.htmDoes anyone know if this bill passed? It's about mandatory IVIG coverage for PANDAS in CT beginning in January 2016.
  3. Hello, I'm new to this forum. I have a family member who is diretly impacted by PANDAS. IVIG has been suggested as a possible treatement by our doctor but our insurance company is denying care. We noticed that there is a phase 3 clinical trial going on right now for IVIG and PANDAS. Any idea when this may be an FDA approved treatment for PANDAS? Or if not, any idea on how to get IVIG covered? Thanks. Jane
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